following the progress of our premature baby

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Monthly Archives: February 2014

The cost of having a premature baby is substantial. First, there’s the cost incurred by the NHS for life-saving medical care. Then there’s the emotional cost to parents. This is hard to quantify. All I can say is that it is hefty. Life-alteringly hefty. My blog is in part an attempt to explain just how emotionally costly it is, even though I know that the pay-off is huge.

But there are other costs, too. More tangible, grubby little ones. And they can put an extraordinary pressure on you during what can be one the most difficult times of your life.

Oliver’s been pretty snotty for the past week and has struggling to clear it himself so he has needed some suctioning to help him. It’s hard seeing him look so fed up when he’s coughing and struggling to breathe through his nose.

In other news there isn’t much news! Oliver has made no progress with his feeds as we’re caught in a cycle of him not tolerating more feed and it causing him a sore bottom which means less feed so he’s reliant on PN…which in turn isn’t good for his liver. Oliver had a barium study last Friday to see if he had any obstructions in his bowel that were causing him to struggle with his feeds but this came back clear. We have been able to try Oliver with some fruit puree though and he’s so far sampled mango and apple and enjoyed these and it’s nice to see Oliver enjoy tasting food as all his feeds go through his NG so it’s only yucky medicine he gets to taste otherwise.

Oliver multitasking, sucking his thumb and reaching for his ball

This Friday sees the outcome of Oliver’s liver transplant assessment and we’re pretty much certain of the outcome. Our brave little boy needs to be listed for a liver and small bowel transplant. After pinning our hopes on his stoma reversal being a success this hasn’t given us the progress we’d hoped for and Oliver’s liver remains fragile.

To say we are frustrated is an understatement, we thought we’d have a premature baby, let alone be in hospital after almost 9 months in this situation. There really is nothing harder than watching your little boy growing bigger everyday whilst knowing we are still no closer to getting him home. Still, every day is a new day and we’ll take it as it comes.

It’s been another uneventful week for me so there’s not much to report! I’m still no further forward with my feeds because I’ve had a really sore bottom so the doctors had to cut my milk back and then give me Dioralyte instead. I’ve been enjoying some nice nappy off time and my bottom is now a little better so hopefully this will mean I can have milk later. This means I’m still on 24 hours of PN so I’m still stuck here….but its raining lots so I’m not missing much!

I’ve seen quite a bit of the physiotherapists and they’re happy with my development. Since Mummy and Daddy moved my room round I’ve been turning my head to my right more. I’m tolerating tummy time much more, especially if my mirror is there so I can admire myself.

Me playing with my big sis (she just lost 2 teeth and looks funny!)

The speech and language therapist also popped in to see Mummy and Daddy last week and they’re talking about letting me try some fruit puree this week which sounds good! Better than that yucky milk anyway!

My liver is still the same and there’s a meeting about me on 21st Feb when the doctors will decide if I should go on the transplant list.

I’ve been really sleepy the last couple of days so Mummy and Daddy are really hoping I’m not getting poorly as any bugs I get make my liver even worse.

That’s all for now. In the meantime please keep sharing my journey! Mummy’s Twitter is franhjones.

It’s been a fairly uneventful week on Ward 2 this week. I’m feeling pretty good and have been enjoying lots of playing with Mummy and Daddy. I’m getting pretty tickly and giggled lots the other day!

I’ve been back on my milk for most of the week and I’m just having it through my NG tube. Mummy has now been signed off to do my feeds and Daddy isn’t far behind! I’m up to 7ml per hour so I’m nearly back to to what I was having before my surgery. Hopefully this means I can have my PN reduced soon and then I might even be able to escape from the ward for a little bit.

Practising sitting up with Mummy's help

The surgeons are happy that the operation went well and that I am pooing so they won’t be checking on me anymore.

Dr Hartley came to see me the other day and gave Mummy a pretty graph showing my billarubin levels and they’re looking OK at the moment…but they need to come down further. I also had a blood top up this week as my haemoglobin had dropped.

Mummy and Daddy have rearranged my room this week as I always look to my left and they’re worried my head will stay a wonky shape so they’ve tricked me and moved my cot so I have to turn the other way to see what’s going on! I only have a boring wall to look at otherwise so I suppose they’ve won!